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June 2018
The International Foundation For CDKL5 Research’s International CDKL5 Family Education and Awareness Conference
The 4th International Family Conference "UNITY FOR A CURE" This conference will be an opportunity for medical professionals, caregivers, and patient families to come together collaboratively to learn about the latest research and treatment for CDKL5. Registration for this conference is FREE
Find out more »The Alpha-1 Foundation’s Annual National Education Conference
$150
27th Annual Alpha-1 National Education Conference This event will allow Alpha-1 and COPD patient families to learn more about their diseases and stay informed about the latest in research and disease information. Registration Standard/Guest/Teen/Child/Per day: $150/$135/$135/$110/$135
Find out more »The Cyclic Vomiting Syndrome Association’s International Adult and Family Conference
$250
The 13th International Adult and Family Conference This conference will be an opportunity for the cyclic vomiting syndrome patient community to learn about a variety of subjects related to this condition. Registration Members: $175/$225/$275 (Single/Couple/Family) Non-members: $250/$300/$350 (Single/Couple/Family)
Find out more »Foundation for Ichthyosis and Related Skin Types’ National Conference 2018
$300
20th Biennial FIRST National Conference "Tune in Together" Join the Foundation for Ichthyosis and Related Skin Types (FIRST) at their biennial national conference. People with ichthyosis bullosa of siemens, their families, and disease experts will come together to network, build community, and learn the latest in research and treatment. Registration $300/$120/$35 (Adult/child/toddler)
Find out more »The Pulmonary Hypertension Association’s 2018 International PH Conference and Scientific Sessions
$150
"PHinding Your Hope" This is the largest gathering of the PH disease community in the world. This will be an opportunity for empowerment for patients with PH. Participants will learn about the best strategies to cope with this illness on a daily basis, as well as have the opportunity to consult with PH experts and learn the latest in disease research. Early Bird Registration (ends 4/30) $150/$125 (Patient members/child patients) Regular Registration (after 4/30) $175/$150 (Patient members/child patients)
Find out more »The Cure JM Foundation’s National Conference and Fundraiser
$100
The 2018 National Conference and Fundraiser This conference will be a change for patients and their families to meet one another to build community and support. In addition, disease experts will present the latest in juvenile dermatomyositis research.
Find out more »The Alagille Syndrome Alliance’s First Annual Gala
$75
The Gala of Dreams "The Dawn of a Dream" This is the first gala event hosted by the Alagille Syndrome Alliance (ALGSA). Open to all members of the Alagille syndrome patient community, the event will celebrate the latest achievements in research from scientists as well as the contributions from the health industry and nonprofit allies. The event will feature food, dancing, and and awards presentation.
Find out more »July 2018
AMCSI’s Annual Arthrogryposis Multiplex Congenita Conference
$75
The 13th Annual Arthrogryposis Multiplex Congenita Conference This conference will be a chance for families affected by AMC to converge and share stories and support. In addition medical professionals and experts will be present to share the latest in AMC research and treatment. AMC families will be able to meet with them to learn more and get firsthand feedback. Registration Patients can attend the conference for FREE. Early bird (before 4/30) Members: $60/$40/$10 (Adults/children/under 1 year) Nonmembers: $75/$50/$10
Find out more »The National PKU Alliance’s 2018 NPKUA Conference
$249
"Advance the Dream" This conference will be a chance for PKU patients and their families to learn the latest about PKU research and treatment from disease experts. The event will also be a great opportunity for PKU families to share stories, build community, and network with each other. Registration Members: $299/$149/$99 (Families/individuals or extra family members/adult patients) Nonmembers: $399/$249/$199 Industry reps: $429
Find out more »Little People of America’s National Conference
LPA National Conference Orlando 2018 This event will be a great opportunity for those affected by dwarfism and diastrophic dysplasia to build community and have fun with one another. This will also be an event that will provide an uplifting, educational program that will allow participants to learn more. For registration info, call 714-368-3689.
Find out more »APFED’s EOS Connection 2018
$150
The 16th Annual Patient Education Conference This event is for patients and families that are affected by any eosinophilic disorders, such as eosinophilic gastroenteritis, Eisenmenger syndrome, eosinophilic esophagitis, and eosinophilic fasciitis. Attendees will learn the latest in research on these disorders, have opportunities to meets with medical experts, and share and network with one another. Registration Early bird (before June 15th) $125/$150 (members/nonmembers) After 6/15 (on-site): $160 All attendees age 11 and up must register.
Find out more »FOD Support Group’s International Metabolic Conference
2018 FOD/OAA International Metabolic Conference Families dealing with fatty oxidation disorders, methymalonic acidemia, and organic acidemias will feel right at home at this event. At this conference, patient families will be able to support and network with one another as well as learn the latest information about the fatty oxidation disorders and organic acidemias. Registration is FREE for families. (Health professionals: $50)
Find out more »The Sotos Syndrome Support Association’s 2018 Conference
$135
"Learn, Network, and Bond!" This event will be an opportunity for Sotos syndrome patients and families to come together for a weekend of support, community building, and education. Additionally, Sotos syndrome researchers will be in attendance to present the latest in research and treatment, and medical professionals will be available for personal consultations with patients and their families. In order to attend the conference, a family member or individual must be a member of the SSSA. Registration Early bird…
Find out more »The National Urea Cycle Disorders Foundation’s Annual Family Conference
$65
The 2019 NUCDF Annual Family Conference This year's conference will be a unique opportunity for researchers, patients, families, and medical experts to come together and spread support and knowledge about urea cycle disorders. Participants will have a chance to learn the latest in research and treatment for urea cycle disorders and get informed about the latest in day to day management. Registration This conference is FREE for members of the NUCDF and their immediate families. Nonmembers and extra family members:…
Find out more »The National Foundation for Ectodermal Dysplasias’ 2018 Family Conference
$150
"Bridges to Inspiration" At the 2018 conference, families and patients affected by ectrodactyly-ectodermal dysplasia-cleft syndrome and other ectodermal dysplasias will be able to build community with each other, network, and share stories. In addition, medical experts will be available for one on one consultation in order to determine the best treatment profile for patients. Registration $100/$150 (Child/adult) Late registration (5/26) $150/$200
Find out more »The National Fragile X Foundation’s 16th International Conference
$525
The 16th NFXF International Fragile X Conference This event will cover all fragile X disorders and is the largest fragile X event in the world. Caregivers, families, patients, and medical professionals are all encouraged to attend. Families will be able to network, support, and share with one another as well as consult directly with fragile x syndrome experts. Learn the latest news in treatment, research, and management strategies. Registration Early bird (until 5/14) $525/$1025/$350/$330 (individual/families/students/self advocates & siblings) Regular (5/15-6/12)…
Find out more »The Williams Syndrome Association’s National Convention
$400
The 2018 National Convention At this event, Williams syndrome patients and their families will have a chance to learn the latest in research, treatment, and diagnostics from widely reputed Williams syndrome experts. Registration Standard (Until 5/15): $200/$250/$400/$550 (one adult 1 day/two adults 1 day/one adult/two adults) Late registration (5/16 and after): $225/$300/$450/$600 Patient/youth programs (Standard): $50/$65/$75/$175/$225 (young adult 1 day/infants, toddlers/school age, teens, WSA gang, dream team 1 day/infant, toddlers/school age, teens, WSA gang, dream team) Patient/youth programs (Late): $90/$100/$200/$250 (infants,…
Find out more »The Marfan Foundation Hosts 2018 Annual Conference – Santa Clara, California
The conference will take place is Santa Clara, California July 12th-15th. To register, please sign-up for emails by visiting the website below.
Find out more »National Organization for Albinism and Hypopigmentation’s NOAH Conference 2018
$185
#NOAHCon2018 The event will be an opportunity for members of the albinism community to come together, share stories, and build community. Participants will be able to learn the latest about albinism research. Registration Early deadline: 4/16/18 $110/$185/$300 (children 5 and under/ages 5 and up/professionals) Regular deadline: 5/14/18 $135/$240/$375
Find out more »The MAGIC Foundation’s 24th Annual Convention
$195
The 24th Annual Convention This conference is available to patients and their families that are affected by septo-optic dysplasia and other disorders that impact a child's growth and development. It will serve as an opportunity to meet other members of the septo-optic dysplasia patient community and learn more from experts about the latest information about these disorders. Participants will also learn about best practices for managing these conditions. Registration Standard registration: $195 (additional adults: $25) Daycare: $55/day per child Museum…
Find out more »The Marfan Foundation’s Annual Conference
$375
This conference is available to children and adults affected by Marfan syndrome and their families. It will serve as an opportunity to meet other members of the Marfan syndrome patient community and learn more from experts about the latest information about this syndrome. Participants will also learn about best practices for managing the condition and will have the opportunity to connect with other families and share their stories. Registration Early registration (Before 6/1): $375 Late registration (After 6/1): $425…
Find out more »The Aicardi Syndrome Foundation’s 2018 Family Conference
The 2018 Aicardi Syndrome Family Conference At this event, attendees will be able to meet other families that have been affected by Aicardi syndrome. In addition, the conference will be an opportunity to learn the latest in Aicardi syndrome research and treatment. Registration for this conference is completely free, but attendees must be prepared to cover travel and lodging expenses.
Find out more »Osteogenesis Imperfecta Foundation’s National Conference
$195
2018 OIF National Conference This conference is available to children and adults affected by osteogenesis imperfecta and their families. It will serve as an opportunity to meet other members of the OI patient community and learn more from experts about the latest information about the condition. Participants will also learn about best practices for managing osteogenesis imperfecta. Registration Children (childcare included): $210/$235/$260 (early bird/regular/on-site) Children: $160/$185/$210 Teens and adults: $195/$220/$245 Early bird: until 4/30 Regular: until 6/30 on-site rates are…
Find out more »The Platelet Disorder Support Association’s ITP Conference 2018
$150
Annual ITP Conference This event will be an opportunity for ITP patients and their families to learn the latest info on ITP research and treatment from medical experts. In addition, families will be able to network, build community, and support one another. Registration Members: $125/$50/$100 (adult/child/single day) Nonmembers: $150/$60/$120
Find out more »The National Neutropenia Network’s Neutropenia Family Conference
$250
2018 Neutropenia Family Conference The Neutropenia Family Conference will be a convergence of health providers, researchers, and industry leadership to present the latest research and treatments in the field of neutropenia to the patient community. The event will also be an opportunity for neutropenia patients and their relatives to network and share their experiences with one another. Registration (ends 7/10) $250/$175/$125 (adults/youth/children) youth: 12-17 yrs child: 4-11 yrs
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